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Lyme results from IGENEX - Please help!

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Posted 4/6/2015 4:31 PM (GMT 0)
Can you please help with these results?

IFA, B BURGDORFERI G/M/A was 80 (= or >80 Positive)
IgM WESTERN BLOT - NEG/NEG (IND for 34/39; ++ for 41; + for 66)
IgG WESTERN BLOT - NEG/NEG (IND for 39; ++ for 41)
GENOMIC - B BURGDORFERI - NEG
PLASMID - B BURGDORFERI - NEG

These are so confusing. Can you please give me an "off the books", unofficial assessment?
Posted 4/6/2015 4:59 PM (GMT 0)
Hi cirenep, welcome.

Did you check out the new to Lyme thread? There is information there about how to read a Western Blot. https://www.healingwell.com/community/default.aspx?f=30&m=1606610


Since your Elisa/IFA number is 80, and the comparison says = or greater than 80 is positive, that means your test is positive.

34/39 are Lyme specific and you have IND-- which means they found something there. This is a positive test, to me.
Posted 4/6/2015 5:03 PM (GMT 0)
Hi cirenep, it sounds like you have Lyme based on your test results. The fact thay you showed IND for lyme-specific bands means that you have had the infection at somepoint, and although the bands are not showing up as positive, your body is producing antibodies. Since lyme is an immune suppressing disease, it may not always show the presence of antibodies on a test although the infection is active in your system.
Posted 4/6/2015 5:04 PM (GMT 0)
I did check that thread but it was very confusing.

Both western blots were NEG (NEG for both Igenex and CDC) so could that mean the IFA is a false positive?
Posted 4/6/2015 5:07 PM (GMT 0)
No. I've never heard of a false positive Lyme test.

Also, the tests may have been ruled as overall negative, but they aren't negative. You have some reactive bands, which means there are Lyme antibodies present.

I highly recommend you see a LLMD.
Posted 4/6/2015 5:09 PM (GMT 0)
Thanks for the info. Alot to digest at the moment. :(
Posted 4/6/2015 5:28 PM (GMT 0)
Cirenep, believe me, all of us are here to support you and answer any questions you may have. Some of the really experienced vets here have a wealth of knowledge and have also healed from Lyme/co-infections. You can also email anyone of us, the blue envelop underneath our name allows you to send messages to each user.
Posted 4/6/2015 5:33 PM (GMT 0)
Thanks for your kindness and reassurance. Is it possible from the results I gave you to tell me if it's a serious case or not?
Posted 4/6/2015 5:44 PM (GMT 0)
It's difficult to say, the reason being is everyone experiences symptoms, how they react to Lyme/co's and how they heal completely differently. It depends on a lot of factors, your overall health, the strength of your immune system, your diet, your stress levels, how well and how much you are detoxing (really important in healing), etc. My best advice, which I'm sure you've seen before on here is to find an LLMD. Believe me, I spend every day wishing things could be different and I didn't have this so I can go back to the gym and live my life the way I want to. But you will heal. As long as you want to, and are willing to put in the effort, you will get better, no question.

If you don't know an LLMD in your area, you can start a new thread labeled "Looking for LLMD in (insert your area, city, state). Members will help you look for one who is ILADS trained. From there he/she can interpret your lab results and clinical findings during your visit. They will also help guide you in your treatment and how severe your case is.
Posted 4/6/2015 5:52 PM (GMT 0)
Thanks for the advice and encouragement! We appreciate it.
Posted 4/6/2015 6:12 PM (GMT 0)
Cirenep:

Welcome!

I will tell you my story really brief.

8 yrs ago my test was CDC positive through quest diagnostics
was treated with 1 mo of amox
2 mo later my test was negative and I was told I was "cured"
5 years after I was "cured" I was given steroids and all my symptoms came back to the point that I was almost crippled
Lyme test came positive again but I was told it was a false positive
I continue to get worse
Another test, another + test, told again was a false positive by ID dr
No one would give me any treatment
Another test and I started to show 3 + bands on IGM and IGG suggesting late lyme but still no one would treat me and at this point I was so crippled and had almost all symptoms including neuro

I eventually found a LLMD that treated me and I got well after 1 year of abx. He realized that on top of Lyme I had Bartonella, although I tested negative. Until he treated me for Bartonella, I didn't see much progress. An LLMD would look at co-infections. Treating someone for Lyme only and not addressing the co-infections is a mistake because most of us don't have just lyme.
Posted 4/6/2015 11:31 PM (GMT 0)
Hi Cirenep!!
Welcome to our community!! I'm so glad you found us!!

Let's start off with your first questions and see if I can't make things a little more clearer for you. I'll answer in a different color for each of your test results:

IFA, B BURGDORFERI G/M/A was 80 (= or >80 Positive)

This is what is known as the ELISA. It's actually the least accurate test out there (catching only about 30% of those that actually have Lyme, even when done by the best labs we have. The fact that you have a value of '80' means that it's a positive for Bb (Borrelia Burgdorferi) - being positive for Bb is the strictest meaning of Lyme disease as it's only one of the over 100 strains that we know of so far that cause human illness. This test relies on the body producing antibodies to a infection that is known to suppress the body from producing them. It's a crazy idea to think that it would be a reliable test based on that - but if a person tests positive with the ELISA, it's incredibly rare for that person to not have Lyme.

IgM WESTERN BLOT - NEG/NEG (IND for 34/39; ++ for 41; + for 66)
IgG WESTERN BLOT - NEG/NEG (IND for 39; ++ for 41)
This is from what is known as the Western Blot. A slightly more accurate test, but still relies on antibodies that your body may or may not be producing. The Western Blot at least breaks it down into bands and we can then explain what each band means.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage. The more +'s you have beside a number, the stronger the reaction.


IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi (Bb), sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Band 34 indicates OspB - Outer Surface Protein "B" - which is specific to Bb

Band 39 indicates BmpA - Bacterial Membrane Protein "A" and is specific to Bb.

So you can see that you have two bands that are Lyme specific that you test positive for and the only way for those bands to be positive is if you have the Lyme bacteria in your body so that your immune system is making antibodies to it.

GENOMIC - B BURGDORFERI - NEG
PLASMID - B BURGDORFERI - NEG

I don't really understand all of the information on these tests and why they can be negative at times as they are looking for DNA pieces of the Lyme bacteria. The only thing I think I understand is that just because a vial of blood is drawn from a person with Lyme disease, it doesn't mean that there is DNA pieces in that specific section of blood that is taken.

Is it possible from the results I gave you to tell me if it's a serious case or not?

No, not by the test results, but we can often estimate how serious your infection is by how long you have been infected and how seriously you are compromised at this point. Please take a look in the "New to Lyme? Start here!" thread for tons of helpful and important information and for the all important symptom lists!! Let us know how many of those symptoms you have and we might be able to tell you something more, but likely nothing that you don't already know for yourself.
Posted 4/7/2015 5:54 PM (GMT 0)
Thanks for all of the EXCELLENT and USEFUL information! I really appreciate it.

I had a 1/2 hr phone conference with a Dr who reviewed the results. (We ordered the IGENEX test online and this Dr works for the company I ordered the test from, so he's very used to reviewing these tests.)

From my notes.... He said that it appears that she more than likely does not have lyme but probably has co-infection(s) that are causing the lyme antibodies to be produced. He said I should do a co-infection panel, DNA stool test and perhaps an auto-immune screening test based on symptoms.

I think to be safe I'll find a good LLMD (in FL) to review this report for a second opinion maybe.

Any thoughts would be appreciated. :)
Posted 4/7/2015 5:56 PM (GMT 0)
He said she doesn't have Lyme even though the Lyme ELISA is positive? What?
Posted 4/7/2015 9:09 PM (GMT 0)
And there is no other infection that will make Bb specific band show up as positive other than Lyme itself. This doc doesn't know what he's talking about, or you misunderstood - sorry. But that is the misinformation we are fighting.

Not to even mention what Sarahm did about the positive ELISA, which is hard to get!!! Only 30% of those with Lyme test positive on the ELISA!

I'm so very glad you are going to go see a real LLMD!!

And you have said "she", so this is a family member or loved one we are talking about and not you? Just curious.

And since that doctor that you spoke with has no clue, I surely wouldn't encourage you to follow his advice on testing either. You can ask the LLMD's office what they recommend, or ask on here though!
Posted 4/9/2015 1:53 AM (GMT 0)
Yes, I am writing on behalf of my wife, who is understandably very worried and concerned about all of this. Because of all the misinformation out there I'm so glad I found you all! I will be posting a new thread about good potential doctors in the area. Thanks again to all of you!
Posted 4/9/2015 2:14 AM (GMT 0)
"He said that it appears that she more than likely does not have Lyme but probably has co-infection(s) that are causing the Lyme antibodies to be produced. He said I should do a co-infection panel, DNA stool test and perhaps an auto-immune screening test based on symptoms."

Sorry, but that is the dumbest thing I have ever heard. I was given the run around before, that the test is false positive, that I had the infection but I was cured because of one mo of antibiotics, but never heard that a person that has Lyme antibodies doesn't have Lyme. Frankly, any doc who says this should not even practice. What do they teach people in medical schools these days?

Post Edited (Simela1) : 4/8/2015 8:35:33 PM (GMT-6)

Posted 4/9/2015 2:29 AM (GMT 0)
I'm beginning to agree. I'm officially looking for a REAL LLMD. I started another thread for that. :)

Would the other tests he suggested be worth getting anyways?
Posted 4/9/2015 2:54 AM (GMT 0)
Make sure you make your email able in your profile at the top of the page, so that members can email you with LLMD names. We do not share that info here.

"Would the other tests he suggested be worth getting anyways?"

What are her symptoms?

If you can spend the money, it would be good to get a full co-infection panel.

Otherwise, I would get the bartonella test as the symptoms are very similar to lyme... Why? Because if she has both, treatment is different and treating lyme doesn't usually take care of barto, which has to be targeted with different abx. My son has both barto and lyme and I was treated for both as well. I knew he had both before we even tested, based on symptoms.
Barto is more related to muscle pain, sole pain and forearm pain in my opinion, but there are overlaps and not everyone gets sole pain for example.

Babesia seems to cause air hunger, dry cough, and chest pain, but lyme and barto can too. So, it is hard to tell you which tests to get because the tests are not always accurate anyway and some people test negative even with igenex. Does she have psychological issues, such as rages? I find that this is more pronounced with barto than with lyme, but lyme can cause people to go all psycho, so it is really, really hard to determine.

I also associate rib pain with barto, although lyme can cause it too.

It is not uncommon to have at least 2 of the co-infections. Fisher test for Bartonella seems to be a good one. I would do at least that one with Igenex. I don't think the other ones are as accurate and you can always do more tests later, after she has treatment for lyme or lyme and barto if she has both, when her immune system will get stronger and she then may produce antibodies to a disease she is not producing now.
Posted 4/9/2015 3:34 AM (GMT 0)
@Simela1,

Thanks for all the info and tips!!!!

In my profile I have my email address entered. Did I do enough? Sorry. I'm a newbie. :(

I think I can afford the full co-infection panel so I'm going to order that. Just wondering, do you know if this covers mycoplasma pneumoniae too? I homeopathic test showed she had that in the past. Not sure if that is even considered a co-infection or a totally other type of sickness.

Really appreciate the "barto" info. Man, so much to learn, but I'm SOOOOO glad to have met all of you precious people. :)

Where's a good place to purchase the fisher test online? Is this the test here? http://www.truehealthlabs.com/Bartonella-FISH-Igenex-p/igenex_289.htm
Posted 4/9/2015 3:47 AM (GMT 0)
We did the Fisher test and the western blot through Igenex. Visit their site and you can order a kit that will ship to you for free. They also have info about what tests cover what--I don't remember.

We didn't order the kit because our LLMD had them in the office and he took my son's blood and send it himself--we just had to fill out a form and give our credit card #, that was sent to igenex along with my son's blood.

I hear that any doc can order the test (If you don't find a stubborn one) and you can go to any lab to take your blood sample and pay them a fee and have them send it to igenex> another tip:

MAKE SURE YOU HAVE HER BLOOD SAMPLE TAKEN AT THE BEGINNING OF THE WEEK FOR MORE ACCURATE RESULTS, so that the blood doesn't sit on the shelf during the weekend. if you spend the money for this, you might as well do anything you can to increase accuracy.

Post Edited (Simela1) : 4/8/2015 9:51:53 PM (GMT-6)

Posted 4/9/2015 4:15 AM (GMT 0)
Thanks for the info. If you're happy with your LLMD can you message me his name so I can research? :) Thanks!!!
Posted 4/9/2015 4:36 AM (GMT 0)
My wife's Igenex test was drawn on a Wednesday. Does that mean the test results were not accurate? If we did it again is it possible that the results could be different? Just wondering. Thanks!
Posted 4/9/2015 5:37 AM (GMT 0)
They could, but it could also be that her immune response is low and that is why she doesn't have more + bands. If you want a better answer, call igenex and discuss this with them. I have heard from a member here that for her husband, for an extra $100, they will look at some of the IND bands in more detail and do a test to see if they are positive. Band 39 is specific to BB protein and there is research done stating that if one is positive for this band, one has lyme and should be treated asap.

In other words, if you have the BB protein in your blood, you have BB, and docs should stop the nonsense and treat you even if this is the only band you test positive for. Makes sense! How can you have the protein of the BB in your blood and not have Lyme? It's stupid to think otherwise! So I think it would be helpful to get that IND on 39 into a positive, for your peace of mind and just to be sure your wife is positive. IND means they didn't see enough to make a positive, but that doesn't mean is not there. If it wouldn't be there, it would be negative.
Posted 4/9/2015 5:48 AM (GMT 0)
@Simela1

I sure appreciate your good, I mean GREAT, advice! :)

I found a local LLMD who is also an ND and a member of ILADS. I'm trying to make an appointment with him.

With proper treatment, is it possible that "Band 39" and the rest of the nasties can be cured forever? I'm hopeful.
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